"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." – Khalil Gibran

A.S. Face 0460: Phil Mulkins

My Story – Ankylosing Spondylitis

I am 35 years old. I have had Ankylosing Spondylitis since I was 18 years old but didn’t get diagnosed with AS until I was 28 years old.

It was just after high school when I started working 12-14 hour days on a Hog Farm. During the first year, I experienced pain and stiffness in my Hips and Lower back and even sciatic nerve. I didn’t know that I even had a disease, so I put up with the pain as though as it had came from working so hard. I remember I didn’t want to do anything but go to bed when I had returned home from work. A year and a half had past and I couldn’t live that life anymore so I went to work for a Welding company. I was kind of made fun of alot because I couldn’t even lift a 50 pound bag of floor dry, but in turn, was respected for doing my job and using my head in figuring out how to move heavy objects after welding them together. I still had a great work ethic and I used my head to get the job done as best as I could.

For the next 10 years, I worked in factories in my town and finally the last placed I worked, I sprained my back and they let me go from that job. During that time, I had went to go see a Physical therapist for my back sprain. The thing about it was that the therapist that worked on me, asked another therapist if he thought I had Ankylosing Spondylitis. He diagnosed me, but didn’t record it. By this time, I was pretty tired of life. But, with the physical therapy and a new drug called VIOXX, I felt renewed! I felt so good when I left the hospital, I started crying. I have worked for 10 years downing Advils 4 or 5 times a day. For the next few years, I went to college and took it easy. I had to make money so I worked as a pizza delivery guy and owned my own Detailing business for a couple of years. Then, the terrible news broke, “VIOXX will be taken off the market due to health issues”. I was stunned, Vioxx was my miracle drug! I couldn’t believe it! So after I had been taken off Vioxx, I started going down hill. I lost weight, had pain all over my body, could barely walk but still delivering pizzas to survive. I finally had enough. It was to the point where I couldn’t do my job. I couldn’t walk up staircases and carrying bags of food and stacks of pizzas was getting harder and harder to do. I finally came to terms that something was wrong with me. How can my body be this weak when I get plenty of exercise? Why do I feel like a 90 year old man? If Vioxx helped me, what is wrong with me? So I did some research and asked my family doctor what was wrong with me. Since I didn’t have any insurance, my doctor said he could test me for different things, but it would cost me a lot of money so he gave me an exercise sheet and some Celebrex and sent me on my way.

After so long, I refused to listen to sit on the sidelines and go through pain. I wanted to get to the bottom of it. So after doing some research, I found out what Ankylosing Spondylitis was about. I just knew that I had this disease since it started in the hips and lower back. So, I drew some diagrams of where the pain and problems were in my body and made a list of what I have been diagnosed with and what I thought I had but haven’t been diagnosed with yet and I had gotten myself a new family doctor. When I went to see him, I explained that I wanted to know if I had this disease. AS is a little difficult to be diagnosed with, so my doctor thought it would be a long shot so he tested me for the HLA-B27 gene. When I went back to see him, he couldn’t believe that I had diagnosed myself! He had told me I was very smart. I guess if you do your homework, and you have a body of a 90 year old man, and you can diagnose yourself with AS, it makes you look smart, like a doctor! LOL! So he sent me to a Rheumatologist. I didn’t know it would be so expensive for one visit (Over $200). But when I went in with $100 cash and a $10 check from the salvation army, they felt pretty bad for me. That one visit I finally found out that I, indeed, had Ankylosing Spondylitis! I was relieved but kind of sad. I knew the rest of my life would be filled with doctor visits and I would have to take medication for the rest of my life. He tried putting me on Bio-logic meds and I was so scared to take anything that could cause cancer, so I refused.

A year had past and I was working on getting help from the state to help pay my medical costs. But since they couldn’t make a decision within 90 days, they had to give me a medical card by default. SooOO! I used my medical card as much as I could to try and get some tests done on my back to see what the damage was. Turned out, my lower back was fused and I had some other stuff wrong with me. Thank god I was able to have medical care for a short time because if I didn’t have had that, I wouldn’t have later gotten approved for disability. It took two years from the time I filled out an application to denials and then denial again and finally my hearing. By this time, the judge can clearly see my condition. I went from being 5’11” tall to a new height of 5’6” tall. My back had curved due to this disease and I have a couple of fractures in my spine that are still there to this day.

When I received my Medical Card, I finally had gotten with another specialists who talked me into getting on the TNF Blockers. I started on Remicade, then Humira, and now I am on Enbrel! Enbrel has been a God sent! I still have pain, stiffness, and all of the above, but not as bad as I did back before I had been introduced to it. I now struggle purchasing Enbrel since my insurance won’t pay for all of it. They expect me to pay $700 the first month, $800 the second, and over $1,000 the third and then $97 a month for the rest of the year. Who can afford that? Thank God my doctor has samples for me! I have done been through the Enbrel support programs and other programs and no help since I have Medicare. Bottom line is that since I am married and my wife makes too much money, my insurance doesn’t cover it.

Overall, I feel Enbrel has slowed down my disease down alot and it helps me most of the time. I will never be able to work in factories or even in an office for 8 hour days, but I sure miss my old jobs. My favorite job was working as a welder. I loved building things. Now-a-days I research online, trying to re-train my brain for new ways of contributing to the world. My name is Phil Mulkins, I have Ankylosing Spondylitis, and I suffer from Pain, Joint Stiffness, Severe Fatigue, Kidney Stones, Kyphosis, Fused Spine, Neuropathy, Swollen Joints, and other stuff I try to ignore. But I will not let this disease get me down. I am a fighter and I will keep fighting until the day I die!

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9 Responses to “A.S. Face 0460: Phil Mulkins”

Hello Phil, Very moving story. I am face 103 and respecfully wish to say Never Say Never, there is real hope that you may have found your miracle with TNF blockers I am 54 and have been on Remicade for 12 years, I am doing things at age 54 that I could only have dreamed of doing at age 35…You have my very best wishes as you continue to fight the beast. Cheers!
Jim

I can so relate with you Phil.I worked on a farm and was a welder as well.Also self diagnosed!Surprising when you can’t work,what lengths you will go to find out.I’m feeling alot better now and raise beef cattle,do my own welding and do maybe 5 to 10 hours welding for other people a week.Self employment was my ticket out of this mess.God bless you for sharing and please never give up hope.Face 458

When my doctor first said the word embrel to me I was as nervy as hell but glad I said yes to it like you I still get pain and stiffness but no were as near as much .had A.S for 43 years & been on embrel for nearly 4 years wish it was around when I first had A.S my life would have been a different story I can tell you wish you well hope your A.S does not give you to much trouble.

Thank you everyone for your comments and support! It’s hard to find people who share the same disease in my area. Now I have plenty of reading to do on this site so I can get to know everyone! Thanks again!

Phil: Welcome! I am glad you are getting some relief with Enbrel! My rheumatologist is working on getting me on that, but not sure if I will be able to due to my history of cancer. Wish me well! Glad to hear you your story, and that you are doing better with Enbrel! Stephania #445

Thank you Stephania! I am currently suffering from Kidney Stones, I guess I have 6 total. 3 in each kidney. But they blasted the biggest stone that was causing problems. I just hate the stent they put in. Very Painful! Im dealing with it though. I have 1 more week and hopefully is comes out! We’ll see! 🙂